THE COMEBACK KID

Two full months have passed since Jack went into remission for PTLD (post-transplant lymphoproliferative disorder), a type of lymphoma tied back to his anti-rejection medication for his transplanted kidney.  In our rawness, we have unfurled and emerged slowly from our cocoon with more wisdom and discernment. We have been surrounded by great support that has allowed us to do so. My nervous system feels ready to digest and release which is why I come to this final post. 

Life expands and contracts - every cell, each breath, blink, beat of the heart and so on.  For me, this pulse came to a near halt Dec 22nd, 2022.  We learned a softball size mass was seated deeply in Jack's abdomen, wrapped around the vena cava and attached to his bowel. Awaiting results for his spinal tap and bone marrow biopsy, we were now pulling him off all anti-rejection medications that we had been dosing like clockwork for 16 years to protect his transplanted kidney. My cellular body and bones could not release the 8am and 8pm alarms for these meds. The gravity of the situation, the multiple misdiagnoses, the miss on MRI 3 months prior and aggressive stage of cancer we landed in had left me paralyzed in grief and anger.  Guilt settled in quite nicely afterwards. How dare I mourn my child, when he is still right here.  How human of me. 

Jack chose to quietly embrace his diagnosis, carrying on with school until the day he lost his hair. Reality carved into our landscape more deeply and confidence waned for all of us, including his oncologist. "I feel like I'm letting you down, Jack" as she walked into the room after a pet scan in July. This was one of the most compassionate and gut-wrenching things I had to accept.  We were not out of options yet, but dosing more of the same chemo did not make sense. Three surgeons had previously turned us down in December.  The pedal was down full blast these weeks as we consulted with surgeons and experts around the country (Dana Farber, Mayo, and Harvard Medical) thanks to the most wondrous, generous humans.  I had glimmers of hope and clear moments that felt like the universe had his back. The quiet rally for Jack was huge. The boundary of protection that our dear friends held us in is indescribable. The nourishment at our front door, the care for our home, the rides, the love bombs. I truly don't think words are sufficed here.  

On August 8, Jack unexpectedly came out of surgery and right into remission.  We were fully prepped for more treatment after surgery and had stopped mentioning the other "C" word in our home, college.

Grab a tissue now and take in more joy.  Last Tuesday, Jack suited up for senior night and got back on the field (with his twin bro) and mom quietly balling and gushing underneath rain gear.  While he missed the opportunity to score a goal that night by a hair (pun intended), he did remind us all that his spunk is back by getting kicked out of the game with a yellow card.  He's a fighter, my greatest teacher (along with Sam and Lucy), and now considering a future in sports management or sports marketing.  Transcripts and senior essay available for review. (wink, wink)

As he promised, THE COMEBACK WAS F*ING HUGE!!! 

J - I love you. Thank you for letting me share your story in this space. It is now yours to continue. You have shaped us and most importantly yourself into a sturdy, resilient, (stubborn) being capable of holding tremendous power and light. Thank you for showing us how it's done. 

* photos (the good ones) are courtesy of Caty Mawing photography. 

CEREMONY

On Sunday Dec 18^th, I noticed the swirl of uncertainty coursing through as I questioned whether or not to teach my Monday morning yoga class. Jack had been in struggleville for weeks with unexplained abdominal pain, sleepless nights, and missing important days of his junior year of high school. He was scheduled for a procedure during my class and it was silly for both my husband and I to hover over the next test result. The week before, he received a new diagnosis and another medication. Neither left us confident we had resolution, nor did the medication provide any relief.

I ate my own words that morning, choosing love over fear, and carried on. I taught my class. I spoke about setting up tiny altars, ceremonies, little moments of holy. By the end of class, a text arrived. A moment of brief knowing, a seemingly tidy ending. He received another diagnosis, another medication, but he was going to be okay. They were on their way home.

 

We ran hope through our system for another sleepless night. Jack declared the pain would never leave. As my faith tanked again, I urgently called Mayo Clinic in Rochester Dec 21. By 6am, I managed to get on the schedule for the next day with a GI doc. The winter solstice arrived today, the darkest day, (max tilt away from the light) affirming THIS might yield an answer. 

 

We never made it to Mayo. We landed back in the ER in Minneapolis at 5am and finally learned that Jack had a large mass in his abdomen, a diagnosis of PTLD (a type of lymphoma in the organ transplant world). We learned the mass was present on scan just 3 months prior, half the size. 

Jack and dad spent the next 8 days in the hospital undergoing a surgical biopsy, bone marrow biopsy and spinal tap to understand the depth of disease. Alarms reverberated inside and out again. We learned it was aggressive, but contained. Amen. There was a path forward. 

 

This energy, this dance, is not unfamiliar to us raising a boy with chronic kidney disease.  Covert coping mechanisms intact. This crisis was different though. I also had two teens at home who were deeply present to our new reality. There was no hiding. Christmas was 2 days away.  I was frozen, literally.  Both my nervous system and the furnace came to a halt. The blizzard MN was making national news for, had left air temps lingering around -25F this day.  Resolving the furnace quickly, (Perfection Heating!) and narrowing the gap between holiday expectations and Truth was the task at hand. Harry and I brainstormed over Facetime in the hospital. Sadness swept through. It was so clear to me how all the accumulated "little t” traumas had silently piled up for each one of us, just before it topples over. 

                           

We are now allowing space for phase 2 of treatment. The mass continues to be active, contained, and still unreachable via surgery. Jack will begin 4 rounds of chemotherapy, every 3 weeks.  We will continue to meet the moment, as gracefully as possible.

There is much unknown ahead, but Jack's team is cautiously optimistic this treatment will work. 

Mark the moment. Make it sacred. Dance it out. Light some fireworks. This is how we do it.  Thank you for keeping us in a circle of love. 

Ali 

WINNING.

Let's start with the Hoosiers. Jack could not be more thrilled with their current success. Certainly, it would make sense that Jack's oncologist is an Indiana grad, similar time frame to mom (me) and Uncle Jeff.  Dad rocks the candy stripes just to keep a low profile around here.  Things are lining up very well. 

Aside from healing and making the Twitter Indiana Hoosiers page, Jack is focused on being an academic weapon (dad joke) at school. He is also making good headway with treatment. 

Pet scan this week indicates the mass has shrunk substantially but still shows metabolic activity (active disease). A creatinine jump and fever landed him back in the hospital, for just a night. Familiar chemistry and covert coping mechanisms intact by all. Check, check. 

We will stay the course with a 2nd round of Rituximab (4 more infusions, 1 x wk) and repeat pet scan April 11. If there is still metabolic activity, they will reconsider removing remaining mass. Good news here. 

In other news he/we managed to strap on
skis at Whistler/Blackcomb in-between infusion #4 and #5. Along with that bold move, came a virus for mom and Jack. The view and fresh air were worth it. 

Annnnnd, we now have 3 teenagers in the house. Lucy is 13. So proud to be her mom.

Go IU! 

  

MAGIC HANDS

 I splurged in November purchasing this print, "Magic Hands" by Jen Arment. It felt indulgent for the moment we were in and I had no specific place in mind for it at the time.  How convenient that we need them right now. Being proficient and curious about movement, I just love hands. They are instruments of the heart. Jewel beautifully describes them as "thought cooled down into action". Like the hands, our bodies say so much. Jack's intuition was way high this season and I continue to be very proud.

#4th infusion complete. You could say this is halftime, midway through cancer season.  Next pet scan is Feb 7th. Assuming favorable results, we will continue with 4 more infusions.

Jack is looking good, feeling good. Thanks for the loving, healing hands all around. 

Love, A

THE COMEBACK IS GONNA BE HUGE

If you are new here, you'll learn quickly that the Certains have a strong game face and highly dramatic life. We keep it cool here, most days. We also share here, because without you, we wouldn't be here. Community helped Jack find a kidney twice, so far. (age 2 and 13) 

If you've been around the block with us awhile longer, you know we like to go at it alone sometimes, too often. We don't need any of your support because we have two 17 year old boys who know every thing about everything.  We also have a soon to be 13 yr old lady who is on the accelerated emotional intelligence path. Thank God, Harry and I can finally take a rest.  

You may recall my grammar is fair and if you are really keen you'll appreciate the bigger font.  Don't expect a news feed with daily updates. For now, I simply intend to use this space to clarify, integrate, and to lead.

Be assured details will not be overshared here. Mad respect for the boundaries for this fine young man. I intend to engage with what is and help navigate the task of staying present. 

Jack was diagnosed with PTLD Post-transplant lymphoproliferative disorder, a type of lymphoma, well known in the transplant world as a complication to avoid. He has a size-able mass in his abdomen that will need treatment. We also have a transplanted kidney to continue to protect. He will have 4 weeks of immunotherapy, evaluate, and continue another 4 weeks. He has a 75% chance of this treatment plan working. We will reroute to other less pleasant options at that time if he is not responding well. He will return to school, a nice change given he missed all of December.

The last several weeks have been difficult. The details don't really matter. You have your own version of a similar story. To witness one's suffering is harrowing, unthinkable. Little by little, we learn to stand tall and engage with what is.  Choice. Choice with what is.

Our world came into focus so fast everything else outside got blurry. A weird gift that comes with a diagnosis and more waiting. 

Jack got knocked down pretty hard, proving again to be the hardest working player in the room. Your composure, grit and bravery are undeniable. Your words, not mine "The comeback is gonna be huge". We are with you every step of the way. 

To the people that experienced us in the raw the last two weeks, I am lucky to be known and loved so well.

Surrendering, softening is hard. We are programmed to close off and protect (each other, ourselves). We are also not blind to the grace that sweeps through at exactly the right time and cracks our heart and arms wide open.

It will take time to reset. Be assured we feel equipped, well loved, respected and supported. We are better at asking for help. We are better at surrendering when it is time. We are better at clarifying our needs. Oddly, we get better. We will use our voice for the good. For now, all healing hands and light on Jack.

a drop in the ocean

"I am not you. I am something like you. I am nothing but you."

 - Dr. Douglas Brooks

About 6 months after Jack’s second kidney transplant, I went on a two-week pilgrimage to southern India with Dr. Douglas Brooks. It was indeed an arduous journey traveling through 20 temples (in 12 days, at all hours of the night), two schools, poverty stricken villages and cities. The “How was India?!” question was always a hard one to answer. It wasn’t necessarily a fun kind of trip (stuffed into 5 yards of a silk sari, safety and bobby pins poking out of me) although it would be a privilege to do it all over again. It was complicated, uncomfortable, demanding and depressing. It was eye opening and heart-warming. It was a world of contrast and paradox - poverty and abundance, chaos and contentment. I could go on.  Douglas best describes the trip as a “house of mirrors”.  Reflection available in every moment.  While the context was entirely different, the mere two-day pilgrimage we took to Mayo Clinic last week yielded many similar feelings and reflection was no doubt available everywhere.   

Our road trip to Rochester was intended to seek clarity, a second opinion, and a plan for the two tumors in Jack's transplanted kidney. The 2 days at Mayo Clinic were long and daunting but as you walk through you are reminded you are but a small drop in the ocean. The elevator corridor and the valet entrance were bustling with diversity and urgency.  Despite the lack of familiarity, I ran into dear friend who was receiving chemo for breast cancer.  We rarely have time back in the twin cities to connect and yet we lunched together at Mayo- peculiar indeed. We were newbies to Mayo on day one, but by day two we walked through standing up straight with our shoulders back, embracing our reality as it was.

The MRI was the highlight of the trip (for me). I went into the room with Jack and held onto his non slip socks as he was inside the MRI tunnel. I was intentional about gently changing my grip and often to remind him I was close.  He was nervous but playing cool which makes you proud and breaks your heart in the same moment. We were prepped to be in there for 40 minutes. I sat there with nothing to read, no phone, no one to talk to (I know, poor me). I found it entertaining to read every label on the cabinets... "linens", "soiled linens", and so on.  I found every label on the MRI machine to read "Seimens", "danger - don't look at this red laser”, etc.  until finally I had nothing left to do except close my eyes. Calm sank in immediately. I surrendered into the silence beneath the MRI clamor in meditation, in prayer.  I silently asked for courage, hope, guidance and clarity. I asked for health. I repeated mantra. I dug deep for all the tools I have been given. Things seemed to be going well for me... I had a steady stream of grandparents, family friends, students and loved ones - all of whom passed way too soon, that flooded my mind. I thanked and honored them all. I felt assured everything was going to be ok.  Since I had the attention it seemed of many and the powers that be, I extended my lofty request to all my friends and family who struggle with something physically, emotional or mental. (Yes, if you are wondering, you made the list).  Again, the list was long. Too long.  Another reminder of what a drop in the ocean we are. I've always felt the details of Jack's story are unique and yet, not at all.  There is something universal in all of this otherwise I wouldn't share it here in this space.  Different details and different characters are in your story, but surely you can relate in some way. Soon the 40 minutes was up and I felt refreshed and oddly Jack did too. 

We learned a lot at Mayo.  We also affirmed what a great team we have at the U of MN where our care has been for 12+ years. We stand mostly in a similar stance as before. We have 2 cysts, no one likes them, no one will say for certain (no pun intended. at all. not funny. ha.) what they are or are not without more tissue.  

The most likely next step to retrieve more tissue is either another biopsy or possible removal of the cysts (partial nephrectomy).  Mayo would like to remove them. They assure us this is “easy” and won’t compromise his kidney function.  Our team at the U of MN previously felt this was too risky given the lack of reserve in his kidney and would most likely land him back on dialysis in 2018. Hmmpf.

Unfortunately, the last biopsy we had in Dec could only reach one of the cysts - the one that both parties agree looks “normal/simple”. Conclusions had to be drawn based on the limited tissue at hand that both cysts presumably were the same.  We now know that the bigger concern is on the cyst that they couldn’t reach via needle biopsy. (You may recall the great debate about an open vs. needle biopsy). An open biopsy would have been far more invasive and conclusive. Our team opted for the less invasive approach but we were unable to gather all the facts.  The second cyst, which is tucked in near other organs and hard to reach, looks more complex and shows change since the last ultrasound. We all are smart enough to know that first cyst could likely change into something more complex and concerning.

The ball is in our court now. We will reconvene with our team at the U of M Childrens Masonic Hospital next week and decide where to go from here. 

For now, all is well.  Jack feels great. Nothing is urgent. His is healthy within his illness. However, he is without a doubt the elephant in the room. In India, Ganesha, the powerful and wise elephant headed little boy is the first deity that meets you in the threshold of any temple. Ganesa is the lord of beginnings and thresholds. He is known as the remover of obstacles. However, he often puts the obstacles there. As Douglas says "For without the pebble in our shoe, we might not ever act." Ganesha invites you to mark your boundaries, step into your possibilities. He invites you to see more. He invites you to see yourself as him. The elephant is unmistakable, obvious. He wants to make things clear. One of the few treasures I brought home from India was a statue or a murti of Ganesha. 

So, “How was Mayo?”… (thank you for asking/reading). The answer is complicated, confusing and yet we feel calm. While the journey we are on is arduous, it’s an absolute privilege to take Jack through it, and I would do it all again.

When it’s time for this to again be the focal point of our family, we will let it be.  For now, back to laundry, dishes, homework, chaos, and uncertainty.  Thank you near and wide for your continued support and presence.

Love,

Ali

“You are not a drop in the ocean. You are the entire ocean in a drop.” - Rumi

Southern India, Dec 2014

Ganesha 

Lucy, Sam, Harry, Ali, Jack
Approx 12 hours after Mayo pilgrimage, we boarded a plane to CO for spring break.
Another arduous and humbling journey - this time into the mountains.

 

pause

A long and necessary pause was had since my last post...

We were all thrust into high gear when Jack's biopsy in late November came to a halt after finding two tumors on his transplanted kidney. Fortunately, Jack's team was relieved and yet baffled to discover that these tumors were not as they suspected, PTLD (post transplant proliferative disorder) which often points towards cancer.  It was advised that we still meet with Oncology and that we would regroup after the holiday giving everyone a chance to pause and consider our options.

Oncology has since suggested two mixed epithelial and stromal tumors, related to cystic nephroma. We understand this scenario to be very obscure, less than 200 reported cases (typically only expressing on an adult kidney in it's 4- 6th decade). Jack is the only patient in the pediatric nephrology group with this condition.  Oncology's solution is to remove the tumors to eliminate the possibility of this becoming cancer. This would be a significant, complicated surgery due to the location of the tumors being near other organs.  The Nephrology team advised against this plan as Jack would presumably land back on dialysis this year as it involves removing too much kidney tissue. Hence, the conundrum and the pause.

We head back to U of M on Jan 23 to repeat MRI and Ultrasound and hopefully work our way towards an answer.  Our hope is that these tumors are not growing.  Really, my hope is that they are shrinking. Is that possible? I don't know... but it seems to me that  a n y t h i n g  is possible. So, I'm throwing that out there into the universe. Keep your thoughts, good vibes and prayers around this possibility.

"How is Jack?" you ask. I always take that question to heart and think to myself... "well, what part of him?"  I think the same thing when someone asks me this question.  Our mind, our heart, our body all send off different signals. The beauty, the peace, the balance is when they all converge. (This is my daily, moment-to-moment project). So, he is amazing, outstanding, a perfectly healthy 12 year old boy who is doing every single thing he wants to do (minus unloading the dishwasher, taking 20 pills a day and + getting blood draws). However, on the inside, his labs are at times unnerving and there are two tumors on his kidney that don't belong.  So, he's great.. but, he's vulnerable as we all are in any given day.  I choose, most days, to set the lab results and tumors aside until there is something actionable I can do.  Fear or love, it's a choice - a daily one.

I choose love.

He would want me to add "Go Vikings!" (whew!)

(and obviously he gets his moves from me. duh)